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Rare Oral mucsal melanoma
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Rare Oral mucsal melanoma

› Forums › Mucosal Melanoma Community › Rare Oral mucsal melanoma

  • Post
    • October 4, 2014 at 7:41 pm
    cruzinsusan
    Participant

      Sorry to be on here!!  Just dianosed wtih very rare and very grim Oral mucosal melanoma!!

      At stage one in sit tu and all pet scan are clear.  There is not much reasearch on this rare meanoma so I am out here looking for anything that can give me more hope!!

      Thanks Suz

    Viewing 2 reply threads
    • Replies
        • October 4, 2014 at 9:59 pm
        Becky
        Participant

          Hi

          my son was also dx with oral melanoma (tongue) when he was 21. His had spread to one lymph node so stage 3. Believe me I read all the same grim statistics that you have. But my son is 5 years out still NED…so has beat the odds 

          i would tell you to stop googling because it will just scare you, but I know that's easier said than done. I do know that one reason oral melanoma has such a grim prognosis is because it is usually not caught early. Sounds like yours was. 

          Take care

          Becky

            • October 6, 2014 at 1:14 pm
            mary1233
            Participant

              There is a youtube presentation with a panel including Paul Chapman from Memorial Sloan Kettering. He said something to the effect that the survival rates that you read about on your web searches are "last century numbers". He went on to say that they do not know the current numbers because the advances in treatments and research are happening so quickly, but they know they are significantly better.

              Personally, I will not read anything written before 2012 because it is out of date. I have to keep myself on the side of the people who are working to cure me.

              Best wishes.

              • October 6, 2014 at 1:14 pm
              mary1233
              Participant

                There is a youtube presentation with a panel including Paul Chapman from Memorial Sloan Kettering. He said something to the effect that the survival rates that you read about on your web searches are "last century numbers". He went on to say that they do not know the current numbers because the advances in treatments and research are happening so quickly, but they know they are significantly better.

                Personally, I will not read anything written before 2012 because it is out of date. I have to keep myself on the side of the people who are working to cure me.

                Best wishes.

                • October 6, 2014 at 1:14 pm
                mary1233
                Participant

                  There is a youtube presentation with a panel including Paul Chapman from Memorial Sloan Kettering. He said something to the effect that the survival rates that you read about on your web searches are "last century numbers". He went on to say that they do not know the current numbers because the advances in treatments and research are happening so quickly, but they know they are significantly better.

                  Personally, I will not read anything written before 2012 because it is out of date. I have to keep myself on the side of the people who are working to cure me.

                  Best wishes.

                • October 4, 2014 at 9:59 pm
                Becky
                Participant

                  Hi

                  my son was also dx with oral melanoma (tongue) when he was 21. His had spread to one lymph node so stage 3. Believe me I read all the same grim statistics that you have. But my son is 5 years out still NED…so has beat the odds 

                  i would tell you to stop googling because it will just scare you, but I know that's easier said than done. I do know that one reason oral melanoma has such a grim prognosis is because it is usually not caught early. Sounds like yours was. 

                  Take care

                  Becky

                  • October 4, 2014 at 9:59 pm
                  Becky
                  Participant

                    Hi

                    my son was also dx with oral melanoma (tongue) when he was 21. His had spread to one lymph node so stage 3. Believe me I read all the same grim statistics that you have. But my son is 5 years out still NED…so has beat the odds 

                    i would tell you to stop googling because it will just scare you, but I know that's easier said than done. I do know that one reason oral melanoma has such a grim prognosis is because it is usually not caught early. Sounds like yours was. 

                    Take care

                    Becky

                Viewing 2 reply threads

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